Life with MS

“How could I have been so stupid? How can I (being a board-certified neurologist) explain my mistake to my family? Even worse, what could I say to my friend and fellow neurologist who was bending over backwards to evaluate me in a few days? I know he will take one look at me and then kick me out of his office saying, ‘No, you do not have multiple sclerosis’!” This was my internal dialogue that week in May of 2004.

Never mind that I had suddenly developed double vision and muscle spasms causing near falls two days before. Forget that I had imposed on a radiologist friend to get an MRI that revealed typical MS brain lesions. The fact that I had diagnosed hundreds of people with MS over the previous 25 years didn’t matter. I had convinced myself that the diagnosis was wrong. How would I save face when I had to admit it? I even considered sending an email out admitting my error during that week. Unfortunately, I never had to do any of those things.

So, what is it like diagnosing yourself with MS or, any other debilitating, incurable, and poorly understood condition of no known cause and for which treatment (at the time) is limited to a few injectable medications that only might be beneficial? In a word, terrifying. How, after having privately cried out every tear in my body wondering how long I would still be able to support my young family and be an active parent and husband, could I comfort my spouse?

After answering her tear-filled questions about what we could expect with repeated answers of, “I don’t know” she angrily demanded, “How could you not know, you’re a neurologist?” All I could barely whisper was, “Because, nobody knows.” That was my darkest time.

From terrified to test subject

Ask anyone who has been told, “You have MS” and you will get some variant of this experience. It is always personal, terrifying, and compounded by learning just how little is truly known about MS. The only difference for me was the profound and pre-existing understanding of the shortcomings of medical knowledge about MS. I could not ease into the understanding of what having MS meant.

In an instant, my clinical “facts” (or rather, lack of answers) became emotional terror devoid of counterbalance. But, as devastated as I felt then, time helped me. This happens for some (I would like to believe many) people with MS, although the ones able to dig out to not allow MS to take over are mostly the ones who write their experiences down. Yes, I did have to leave practicing as a doctor a few years later because of trouble keeping up on medical advances (my double vision never totally resolved, causing headaches when I tried to read), and memory and word-finding problems.

My ability to walk worsened but I was more fortunate than many, still being able to get around with just the help of a leg brace and a cane. My MS gradually worsened as the injectable medication I first used stopped being helpful. I applied to enroll as a test subject in a clinical trial on a new experimental medication. I had always encouraged my patients to consider clinical trials when I was in practice so how could I not do the same for myself? The new drug stabilized my MS and I made favorable comments about the drug at the FDA deliberations, which led to its approval. I continued its use for nearly 10 years.

Learning what works

How has MS affected me and my approach to life? MS teaches humility and appreciation of even small successes. I no longer promise to keep an appointment or attend a party. “I hope to” or “I will plan to” are the most I commit to. Fatigue or malaise is never very far away and I know not to overdo things on days I have made plans. Even so, my true friends know I may unexpectedly have to cancel at the last minute.

That said, staying as active as possible is extremely important. I get maintenance physical therapy and my therapist is most often gently reminding me to not overdo things. “It is okay to not exercise every day” and “If the exercises are ‘uncomfortable’, don’t do them” (I still have trouble admitting to myself that if I “ache” or “if something feels tight” that I am in pain, which my therapist is constantly reminding me about). I have learned to avoid comparing myself to others I know or hear about with MS. The mantra is true: No two people with MS are identical even if they share common symptoms.

A treatment program that helps one person may not help another, no matter how similar their symptoms. I have tried various gentle Asian martial arts exercise programs and traditional MS-focused exercise programs that many people find to be helpful. These are not what works for me. I have found that having my own self-directed exercise regimen that I do while listening to an online lecture series works best (with a bit of coaching from my physical therapist).

I try to watch my diet, take supplements (vitamins, fish oil, alpha lipoic acid, minerals), and avoid stress. I attend appointments with my medical provider team (MS specialist, internist, psychiatrist, ophthalmologist, physical therapist and dentist) regularly and ask questions about their recommendations but do not allow myself to manage my care (a temptation for any physician).

A passion for advocacy

I have found a new passion to direct the energy and abilities I still possess. I advocate at both the local and federal levels of government on issues that affect people with MS specifically and people with disabilities generally. This all started when, early on in my forced retirement, a friend said, “You know the science behind MS, have cared for people with MS, personally have lived with it, and happen to live near Washington, D.C. Have you ever thought of doing patient advocacy?”

My mental health has improved thanks to time living with MS, my medical providers, medications, lifestyle changes, family and friends, and the community of people with MS I have found who have become my friends, allies, and supports. It is an overused sentiment, I know, but I am healthier thanks to my MS friends and fellow advocacy “warriors.” I am propped up when I need it thanks to them and know it is a mutually beneficial arrangement.

Everyone is different and my story is just my story. Finding whatever is needed to grow and the positive opportunities that unforeseen life changes may open is not automatic, fast, or easy. I had to grieve for my losses before I could find the combination of things that were right for me to dig out of my depression. Only an individual can answer what works for them and another person’s list may frustrate when it doesn’t work for you. Luckily, I found what I needed; you can too.